Tag: Chronic pain

  • A Busy Week of Ups and Downs and LOTS of Appointments!

    Spoiler alert- LOTS going on! This week was full of twists, turns, and appointments. Some good news, some complications, and of course a lot of smiles!

    Monday brought me to my second home, MUSC, for an appointment with a spinal specialist to determine what, if anything, can be done for my back and neck. It also served as a follow up on my L1 compression fracture. The doctor was excellent and had some ideas for all of my issues. He recommended a kyphoplasty for the fracture since, while it is still stable, it’s not healing well. If it is going to happen, it will be done at the main hospital by interventional radiology, but a consultation is necessary.

    Monday also brought an unexpected ER visit upon the guidance of my home health nurse. The hematoma that I ended up with at my last hospital visit was looking bad and angry. The ER wasn’t super helpful but I managed to get an antibiotic as well as a referral for wound care.

    Tuesday was a day of appointments at home. I had PT, OT and an appointment with my medical advocate. I also had a GREAT conversation with PAALS about next steps in regards of “my” service/assistance dog. I am ecstatic to see what the future holds for this area of my life!

    Wednesday was a self-care day! I had my hair cut and colored by my favorite stylist, Amanda. I shared her a smile from Seeds of Happiness with her and she was super excited to share it with her son! I also made a TON of phone calls trying to catch up with scheduling new appointments and follow ups.

    Thursday was a tough day, I really struggled to get up and shower, needing to sleep for two hours afterwards. I had an appointment in the afternoon with the nurse practitioner at my pulmonologist’s office. The appointment was intended to be a follow up for the nodule that was discovered on my lung and the follow up CT scan. The nodule couldn’t been seen because the scan showed pneumonia. I was put on an additional antibiotic (my third), nebs, and Musinex. The bright spot of the day was getting to see my nephew when my sister in law drove me home.

    Friday afternoon was my long-awaited wound care appointment. I didn’t know what to expect and what would happen moving forward. I had a 1pm appointment and was taken right back. The nurse who started the process was amazing! She took my complicated medical history, examined my wound, and set me up for the doctor. Then, the doctor decided that the wound needed a full debridement. This process was probably one of the most painful experiences I have had despite the use of lidocaine. It was miserable, but necessary. He also recommended the use of a wound vac (to be started at my appointment next week). I will visit the wound care clinic weekly for the foreseeable future and then home health will touch base weekly as well.

    Unfortunately, this week made me cancel a lot of plans because of not feeling well. I hate that sometimes it comes across as flaky. I hate even more that I miss out on good things. I used to say that at some point this will pass, but I’m not thinking that will happen. Until then, I will keep smiling, hoping, and praying!

    Me and Amanda sharing a Seeds of Happiness smile!

  • Paying the Price of a Fun Time: How Chronic Illness Always Wins!

    Chronic illness’ worst feature is that it ALWAYS shows up! Somedays you think you have outsmarted it and you got away with something, but payback stinks! I had a super busy and rewarding week. Besides my awesome PAALS visit, I had doctor’s appointments, tech classes, and some family/friends time. Now I am “paying” for it! I hate this.

    For the last 2 1/2-3 weeks I’ve been dealing with some nasty GI issues. I am not quite sure what is going on, but having trouble keeping food down after I eat, regardless of what I eat and dealing with some major abdominal pain. So far we know my platelets are low and my liver enzymes are super high and increasing. Additionally, my spleen is also enlarged. CT hasn’t shown any blockages or anything surgical, which is good since all my major disposable organs are gone!

    I have been working with an awesome, old school type GI doctor who has ordered a huge outpatient workup, but scheduling these tests in a timely manner has been difficult. Yesterday, I drew a line in the sand and decided something had to give. The pain was making me miserable.

    So, I am back at the hospital, trying to find some answers while they help manage the pain and nausea. I would be lying if if didn’t admit that I am nervous that this might go the direction I was going in several years ago, when I ended up with a PEG tube for feeding. That continues to be one of the hardest medical journeys I have taken. I just keep reminding myself that this is most likely something different and that is not the path we are on.

    I am thankful they admitted me this time. I need some answers and some relief. For now, I am resting and trying to get a hold of this stupid pain.

    I’ll be in touch with updates!

  • I’m Working So Hard Independently And Making Progress But Hopefully I am Not Running Out of Time!

    So much attention has been spent on making sure I can stand without much support, I am exhausted I did not realize how much my abs are working. I am sore and tired, but moving along to be able to stand independently. In the meantime, I am still using a slide board at times to move myself since standing isn’t fully happening. I will continue to practice lifting my booty up and off the wheelchair seat. My arms are tired and fear is running high.

    I wish I never lost so much strength. I kept telling the folks at the hospital that I was losing strength and needed to be evaluated for rehab or even just PT/OT, but they did not listen to me.

    Today I was able to complete 10 minutes on the Nustep independently, which felt wonderful. Unfortunately I wasn’t able to stand and pivot to get on the NuStep independently. This needs to happen before I get home. The weekend is coming up, which means less therapy, but I am “owed” some therapy, so I am hoping that happens.

    In other words- I am working hard at growing my audience online through Facebook, Instagram, and even Tik- Tok. I completed a few online courses to help me figure out the allorgrithms to grow my followers. If you see my accounts, please follow them- it would mean the world to me! I am thinking I finally got a hold of what I am doing with the various accounts.All of this is being done Independently!

    I am also enjoying the Winter Olympics tonight is the opening ceremony and I am watching it carefully. It’s enjoyable and hopefully better than the Paris Summer Olympics.

    I’ve managed to figure out how to charge my various devices, including my visible armband. Thank goodness for Amazon deliveries even here!